Just got back from my Day 1, Cycle 5 trip to OSU. 4 cycles down, 10 to go.
Day 1 of the first 8 cycles involves the obinutuzumab infusion on top of the daily 7 pill regimen of ibrutinib and ventoclax. The clinic was a mob scene, so everything took a little while longer than usual, but I was out by 3:30 and had plenty of time to catch a 6 pm flight back home but no time to explore a new coffee shop.
While everything is still proceeding more or less to plan, a few of my numbers went in the wrong direction. In particular, LDH, which measures liver function and AST, which measures kidney function were high after being in range last week. Apparently I’m not the only person experiencing this, and they aren’t sure which med is causing this reaction. Mind you, they don’t start worrying until the AST number is 5 times average and mine is nowhere near that, but it was still a bummer. IGG and IGA, tests that measure antibodies, were also up and high. My neutrophils were also down to 1.09, again far from the .5 where they deny treatment, but low enough where I really need to avoid bacterial infections and I need to take a trip to the ER and will probably be checked in if my temperature is over 100. No sushi, oysters or salad bar for me for awhile.
On the plus side, my platelets were 222, well over normal, which is 150, so I’m not at risk for bleeding out or bruising.
I know objectively I should be grateful I’m doing as well as I am and in particular, that I have no major side effects and I have good energy. While everyone is doing fine on the trial, the impact on my quality of life and side effects has been minimal compared to others. Notwithstanding this, I did feel a little sorry for myself. The numbers were a reminder that I’m not invincible, and there is nothing that I can do other than do a blood draw locally next week to make sure those number don’t get any higher.
While I was down in the moment, I'm posting this a day after I wrote it, and I do feel better and back in the ring to fight the fight. I'll be back in 4 weeks to tell you about Cycle 6!